This post is part of the Epilepsy Blog Relay™. Follow along!
While I wish epilepsy didn’t affect relationships that I have, it is a part of who I am, and it affects every single relationship I have. But, I am lucky. I am so very lucky. 99.9 percent of the relationships I have are with people who are positive, supportive, compassionate, helpful and encouraging.
That said, when I think about epilepsy and relationships, the first people that come to mind are my immediate family, specifically my husband, my mom and dad, and my brother and sister-in-law. That’s my team. That’s the team that will always rally around me and that is the team who will lift me up when I am down. Those are the easy relationships many of us can relate to.
When it’s not so easy
But, what about those slightly more difficult relationships? What about the times when you share your story and it “scares” people that you are inevitably around? And, as a disclaimer, “scares” is probably a strong word, I should probably describe it as what “concerns” people that you are inevitably around.
A while back, I started a new job. It’s been a great change for me, but as you might expect, what comes with a new job, comes new relationships. What come with new relationships… explaining “my epilepsy” all over again, to a new group a people, in a new set of circumstances. You get the picture. It’s intimidating.
I cannot speak for everyone, but in these circumstances, every insecurity that I had as a teenager living with epilepsy comes flooding back. I start to question myself… what if telling them changes how they see me? Will it be okay if I have a seizure and have to miss a day to recover? And so on… So, guess what? For a while, I kept it to myself. I choose (once again) to not tell people upfront. As I slowly gained confidence in my role and felt like I knew everyone better, I decided to tell people my “secret.”
A positive surprise
And, what do you know? Every response I got was the same. First, what can we do to help you if you happen to have a seizure while you are with us? Second, it was you do whatever you need to stay healthy… All of the people I was building relationships with now were supportive, compassionate and helpful.
My feelings of shame and embarrassment were gone. And now, my support system is even bigger than before which is good, because I spend a lot more time at work!
Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern.
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